Holding on to Hope

Thursday March 29, 2018

Life, with or without Parkinson’s, sometimes feels like a tug-of-war between hope and despair, with the part of the rope played by you. Despair pulls with a mighty undertow, dragging you down into an inky netherworld of pain, helplessness, and fear, then hope pulls fiercely in the opposite direction, toward the clean, well-lit promise of health and happiness.

Yet, despair has its attractions and hope has its forbidding side. The lure of despair is the luxury of being able to give up. Sweet surrender. No more herculean efforts to keep going in the face of a relentless foe. No more torturing yourself by continuing to serve in an army that struggles on, oblivious to the fact that it cannot win, only suffer and endure, doomed to be defeated by the superior forces arrayed against it. The dice are loaded, the cards are marked, the fix is in. It’s a sucker’s game, and you at least have the dignity to say that you see through it. Cue Leonard Cohen’s “Everybody Knows”.

Similarly, hope has its unappealing aspects. They form a mirror image of the attractions of despair. If you have hope, you must keep going in the face of afflictions. You do not have the luxury of sitting back and blowing off a seemingly untenable situation. Hope is rooted in the possibility that to change the situation for better is a reality, that with intervention, it can be made better. If you do not act, and the result is bad, it will be, in part, your fault because you had the power to influence the outcome. Hope imposes duties to struggle on and to continue to sacrifice in spite of weariness and pain. To hope is to persevere, not in the knowledge that what you do will make things better, but in the chance it will.

So, which to choose? It depends on making a clear-eyed assessment of the situation and then deciding which is the appropriate response. How do you ensure that you’ve made the right choice? How do you know you have exhausted the relevant information? Despair requires certainty. Before you give in to it, you must be sure there is no room for hope. But there is always the unforeseen, the unexpected, the unintended. Because we cannot predict the future we cannot lightly forfeit our responsibility to hope.

Hope is a better fit with doubt and uncertainty. This is why hope is more often the better choice. Because it is so difficult to see the future, it is hard to have the confidence that despair is the right response. In fact, despair is automatically suspect, because it assumes that we are capable of doing what we have repeatedly failed to do, to see our future. Where there is freedom, there is unpredictability. Where there is unpredictability, there is hope.

As it happens, this fits well with my experience with Parkinson’s. When first diagnosed at the age of 43, I was convinced my productive life was over and I would go from being a vital contributor to a morbid curse on my loved ones. I thought it made sense to do away with myself, rather than to hold fast and drag my family down with me.

Fortunately for me, my wife ferociously swept that notion aside. What followed, to my surprise and relief, was 15 of the most productive years of my life. Something I never would have predicted but am grateful to have stuck around for.